6 Gut-Wrenching Lies My Invisible Illness Tells Me Every Day

I live with chronic pain. Some days it is bearable, relegated to the back of my mind, the occasional sharp twinge to remind me it is there, but able to be ignored for the most part. Other days it is loud and screams lies at me. It tells lies that tell me horrible things and rob me of my desire to keep going.

I have a degenerative spinal condition that causes painful changes to vertebrae in my cervical and upper thoracic spine. Just one of the many uncomfortable effects of this is an almost constant headache that causes pain along the neck and back of the head. It is a throbbing, burning, stabbing, aching, incessant pain called Occipital Neuralgia.

For me, the pain can become so intense that I suffer through all the symptoms of a migraine, sometimes for days at a time. Nausea, dizziness, loss of balance, the feeling of head exploding pressure, shaking, the inability to speak coherent sentences, or remember that the “thing” that has a name that escapes me is just called a fork.

The pain stops me from sleeping, and should I manage to nap, the dreams quickly turn to violent and painful nightmares. On the worst days sometimes even taking a deep breath causes a surge of pain that makes my head spin. While a warm shower is often soothing, some days just the pressure of the water on my neck and skull is painful and makes me feel dizzy. Laying my head down brings no relief from the pain, but at least gives me comfort in knowing if I do faint, I cannot fall. So, I lay and cry, quietly, without sobbing, because sobbing increases the feeling of pain and pressure throbbing through my skull. It is so much more than a headache, it feels as though someone is attacking you and you cannot escape.

While the pain itself is intense and hard to handle, the emotional torment it brings is just as bad. I would do almost anything to escape the lies that it tells me. In the midst of a flare my companion, Pain, whispers constantly in my head until I can’t tell if the words are truth or lies.

These are just a few of the lies I can find myself believing on the bad days, paired with the more rational reasoning on why I know them not to be true.

1. There is no hope.

“You know that life will never get better. The pain will get worse, you can’t take medication to help it, and you won’t be able to cope. There is no hope for you!”

There is always hope. New treatments are being trialed all the time, new medications come out constantly. Just because there are no drugs or treatments that will help me right now, does not mean that there won’t be in the future.

I just need to keep going and have faith and courage.

2. You are useless and a burden on your family and friends.

“You are so lazy, seriously, laying around holding your head, rubbing at your muscles all day. More canceled plans with your friends, you’re lucky they even bother with you! What a lump you are, you can’t do anything. You are useless. Hopeless. Worthless. You are just a burden!”

No! My family and friends have a different view of this.

My husband tells me that even though I can’t work at the moment, that he loves and appreciates the things I do to make a home for him and our children. It feels to me like I do hardly anything, but he sees it differently. He believes I do a great job just to survive on the bad days, and that I’ve acted like a superhuman when he returns home from work to find the house is tidy.

Those who love me won’t be burdened by me on the days I need to take things a little more gently, they will be understanding, just as I am with them if they need help. They don’t mind the cancelled plans, they accept me, because I accept them. True friendship withstands tests like this.

If I had the flu, I would rest, sleep, and take it easy until I was recovered. I would not call myself lazy, or sooky, and I would not feel guilty about cancelling plans because to rest would be an essential part of the healing process. On the bad days when the pain is flaring and my mental health is deteriorating, it is not lazy to rest. It is essential.

3. No one cares.

“No one cares, they don’t want to know that your head is still hurting and you feel sick. You should just shut up and stay away from the normal people.”

This is such a lie, one that is told with such a silken tongue. So easy to believe. There are people who do care, they sometimes do not know what to do or what to say, but they care. My husband, my true friends, my doctor want me to talk to them and tell them when I’m not doing well, but I have to open up to them too.

4. You are a sook!

“Other people have it worse. You are such a sook, you have a low pain threshold, wimp! You should suck it up.”

Yes, other people do have it worse, but no, I am not a wimp. My muscles are twisted so tight that even my massage therapist with 30 years experience can’t get a good hold on them. The nerve pain that shoots through my back, neck, and head is at times debilitating, making it difficult to not faint, or vomit. If my pain threshold is low, it is because it is overworked.

I struggle to act normal every single day, to do normal things, like take my kids to school and clean my home. That’s not weak, that’s brave.

I love life, I love my family and friends, I love to do things for others, to go for walks with my husband, but no about of “sucking it up” works when my body literally seizes up.

5. You are going to die.

“Hey, have you ever thought if is it possible to die from pain? I think you will at least wish you could! Maybe you have a brain tumor?”

Sometimes I believe this lie, I’m quite convinced some days that my brain is going to explode, that surely there must be something terribly wrong for my body to experience this type of pain. But since I have not died yet, it seems to be yet another lie that my condition tells me.

6. The only way out is to kill yourself.

“You might as well kill yourself now, there is no point in hanging around for another 5 or 10 years just getting worse. If you just go on and die, it will be peaceful and you won’t have to put up with the pain anymore.”

Today I had my first truly seductive suicidal thought in a long time. When I woke up again for the fifth day this week with a splitting headache and every muscle in my upper body feeling as though it had been tightened to near breaking point, I closed my eyes and imagined my death. And it was so peaceful. I wanted, in that moment, to take my life and stop the pain.

Yes, this is a lie that my illnesses (Depression, Anxiety, Chronic Pain) tell me, one that spilling out of their spitefulness when the physical pain and the emotional pain combine. These thoughts tell me that there is no hope and death is my only option.

But going back to point number one:

There is always hope; as long as I am alive, there will be hope.